Thirty-seven years ago, after reading a book about one family’s struggle with their deaf son, a story that seemed unrealistic and sugarcoated, I vowed to write a truthful book about raising a deaf child. The book would be filled with disappointment and pain, as well as hope and triumph. Amy Signs is that book.
Our story begins in December of 1969, years before most states required neonatal hearing tests on infants within a few days of their birth. Before 1990, most doctors relied on parents to determine if their child could hear. Even the most observant parents might not realize their child had a hearing loss until the child’s lack of speech was noted at age two or three. By then, several years of crucial preschool speech and language training were lost.
Parents who have a deaf child now should have an easier journey than we did. Neonatal testing should be conducted within a month of a child’s birth. Early detection of deafness or any disability allows the parents to begin educating themselves, so the best decisions can be made for their child before school age.
But, regardless of when parents discover their child has a disability, most are overwhelmed with feelings of shock, loss, anger, sadness, guilt, and frustration. In addition, most babies with birth defects are born to parents with no obvious health problems or risk factors (www.kidshealth.org). About 90 percent of children with congenital hearing loss are born to hearing parents (www.marchofdimes.org), so deciding how best to raise and educate the child is difficult. Professionals offer suggestions based on years of clinical experience, but ultimately the parents must decide what is best for their child.
When Amy was first diagnosed as profoundly deaf, an audiologist told us that our only option was to send her to a residential school for the deaf. Several years into her education at a deaf school, Congress passed the Education for All Handicapped Children Act, which mandated that public schools make accommodations for all disabled students, including deaf students. As a result of this act, today many residential schools for deaf children, including Amy’s school, the Nebraska School for the Deaf, have closed their doors. The majority of deaf and hard of hearing students now attend public schools, for better or worse.
Parents of deaf children must decide how to communicate with their child. They have two choices, which are at opposite ends of the spectrum. The first is oral communication. The deaf child wears hearing aids and is taught to lipread and speak by relying on the child’s residual hearing. Oral communicators avoid the use of sign language. Advances in medical technology, particularly the cochlear implant, give parents another option: surgery. This permanent surgery may restore partial hearing to child making oral communication easier.
The second option is manual communication. Educators have devised several methods of implementing American Sign Language (ASL) into the classroom. Amy’s school endorsed Total Communication; the teachers and students signed but the students also received speech training and wore hearing aids to maximize their language skills.
Before making any decisions about the education of your deaf child, parents may need to revise their dreams for this child. Having unrealistic expectations will frustrate you and your child. Families will still suffer heartache when the words, “your child does not hear” are spoken, but the Internet puts a world of information just a click away. Support groups and educational services can easily be located. The age of technology allows the Deaf to be fully integrated into the hearing society via captioned TV, video relay telephone systems, texting, and Skype. A variety of lighted alerting devices keep Deaf people aware of their surroundings. I would encourage any parent of a Deaf child to think long and hard before expending value time and money to make your child “normal.” (Whatever that means.) Deaf people are not abnormal; they just use a different means of communication.
Amy Signs is primarily Amy’s story, but as in any family, each person’s life has an effect on the other members. The journey my husband Jack, son John, and Amy and I took had its ups and downs, but the overall progression was forward, even though many days it was against a stiff wind. My journey was made easier by my faith in God.
John, I’m sure, became a sensitive, caring individual because of, not in spite of, having Amy for his sister. He bonded with Amy the day she came home from the hospital. Her deafness was never an issue in their relationship. Their close bond remains even now in their adult lives. As for Amy, she’s accomplished more than I ever imagined, earning not one but two college degrees. Her stubborn attitude and independence often worry me when she embarks on another adventure, but I’m her mother—that’s the best excuse I can offer for my concern.
Readers will note that Amy and I have distinctly different writing styles. Mine is more emotional, while Amy’s is more didactic and straightforward. Our personalities are much the same. I react to stressful situations by tensing up, gnawing my fingernails, or feeling overwhelmed. Amy, on the other hand, considers the situation and decides: “That’s not my problem,” or makes a decision and charges ahead.
For example, when I asked Amy to expand some sections of her writing, she sent me this e-mail: “Not everybody can write long book … some people write short book. What you wrote is yours and what I wrote is my kind of style.”
Amy’s writing style is also different from mine because English is her second language. ASL, her primary means of communication, is very expressive, but emotions are conveyed through facial gestures more so than by words. Never having heard a spoken language, converting the visual actions of ASL to written English was a challenge for both of us.
This book was an emotional experience for me because of the painful events I had to recall. Some of my memories were as fresh as if they had occurred yesterday. The choices I had to make were neither simple nor exact. I learned about deafness, Deaf culture, hearing aids, and speech therapy. I talked to other parents to help me decide which methods of communication and education were best for Amy and my family. But I always worried that I might have failed her.
During the book-writing process, I often e-mailed Amy with questions, comments, and suggestions about her writing. Her busy schedule generally kept me waiting weeks for a reply, as it did in January of 2007, when I asked: “Amy, do you feel you have missed out on a lot of life because you can’t hear?” Two months later I received her response:
Well, I never hear or understand what sound means, so it does not matter to me. Compared to people who have heard, maybe they would want to hear again, but I am just fine, so I am happy. Maybe not all deaf people are happy, but for me, I am happy. I have a job, home, friends, et cetera. The Deaf same as hearing people, some are happy, some are not. So hearing does not matter.
I believe my decisions were the best for Amy. Instead of wanting her to be hearing, I embraced her Deafness. Were my decisions right? I’ve hoped so for years. While writing this book with her, I gained a better understanding of her Deaf world. Knowing she is happy and content, with no reservations about my decisions, has been my greatest reward.